Symptom Experience and Management Needs of Breast Cancer Patients Undergoing Endocrine Therapy: A Qualitative Study
Introduction
Breast cancer is a leading cause of mortality and morbidity among women worldwide, surpassing lung cancer as the most common cancer globally.1,2 The treatment and care of breast cancer patients have significant economic and emotional impacts on patients, families, and society.3,4 The increasing costs of treatment and long-term care place substantial demands on medical resources.5 Therefore, understanding and addressing the symptom experiences and management needs of breast cancer patients during endocrine therapy is crucial for improving their quality of life and reducing the burden on healthcare systems.
Endocrine therapy is a standard treatment for hormone receptor-positive breast cancer, which accounts for approximately two-thirds of all breast cancer cases.6 Patients with hormone-dependent breast cancer are highly sensitive to endocrine therapy medications.7 This therapy involves long-term adjuvant hormone therapy, typically lasting 5–10 years.8,9 Endocrine therapy has been shown to reduce the recurrence rate by 34–45% and the mortality rate by 29–34% in hormone receptor-positive breast cancer patients.8,9 These findings highlight the importance of endocrine therapy in delaying the progression of the disease and improving the overall survival and quality of life for these patients.
However, adherence to endocrine therapy can be challenging, with various factors contributing to non-adherence. Studies have reported non-adherence rates ranging from 13.4% to 73.0%,10–12 with 8% to 28% of patients not completing the treatment plan as recommended by specialists.6,13 Between 10% to 50% of breast cancer patients exhibit behaviors such as not taking medication at the correct dosage, frequency, or discontinuing treatment prematurely.14,15 32% of patients undergoing endocrine therapy stop treatment early, with significant interruptions in treatment occurring in the first 1–2 years of medication use, followed by further interruptions in the 3rd year.16 Medication interruption is a significant issue, influenced by cognitive and psychosocial factors such as medication knowledge, motivation, self-efficacy, anxiety, depression, and social support.17–20
Methodology
This study employed a descriptive qualitative research design to explore the symptom experiences and management needs of breast cancer patients during endocrine therapy. The research team consisted of a professor in qualitative research and two master's students with expertise in qualitative research methods.
Participants and Sampling
Eligible participants were breast cancer patients undergoing endocrine therapy, selected using a purposive sampling strategy with a maximum variation approach. The study included 20 patients who met the inclusion criteria, which included being female, diagnosed with breast cancer, receiving endocrine therapy for at least six months, aged 18 years or older, and able to communicate normally. Exclusion criteria were a history of other malignant tumors, breast cancer recurrence during treatment, and other serious physical diseases.
Data Collection
The researchers established good relationships with the participants and conducted face-to-face interviews in a quiet and comfortable setting. The interview process involved explaining the study's purpose, ensuring confidentiality, and obtaining informed consent. The interview duration ranged from 25 to 45 minutes. After the interviews, the researchers wrote reflection diaries to enhance the interaction process and record their thoughts.
Data Analysis
The text data was analyzed using the Braun and Clark thematic analysis method with Nvivo12.0 software. The researchers identified meaningful sentences and generated initial encodings, which were then evaluated and refined to extract new themes. The themes were further clarified and defined, and the final themes were reported logically.
Results
The study identified 13 subthemes, which were categorized into four overarching themes: (1) Substantial Multidimensional Disease Burden, (2) Individual Variations in Symptom Coping Styles, (3) Diverse Symptom Management Dilemmas, and (4) Personalized Symptom Management Needs.
Substantial Multidimensional Disease Burden
Endocrine therapy imposed complex burdens, extending beyond physical distress to encompass psychological pressures that profoundly disrupted physical functioning and social engagement.
Coexisting Physical Symptoms Triggering Functional Decline
Participants reported concurrent physical symptoms with synergistic effects that exacerbated functional impairment. The most prevalent symptom cluster included arthralgia, debilitating fatigue, and hot flashes/night sweats, significantly compromising daily activities, housework capacity, and occupational performance.
Psychological Burden Driving Social Withdrawal
Body image alterations, fear of recurrence, and perceived loss of bodily control contributed to psychological distress, leading to social withdrawal and isolation.
Individual Variations in Symptom Coping Styles
Patients demonstrated heterogeneous coping strategies that significantly influenced their quality of life and treatment adherence.
Adaptive Coping
Some patients adopted proactive approaches, including seeking credible information, communicating with clinicians, implementing tailored lifestyle plans, and integrating treatment into daily life, enhancing disease control and well-being.
Defensive Coping
Others exhibited avoidance or passivity, minimizing symptom severity, over-relying on medications or caregivers, and demonstrating low self-efficacy, exacerbating symptom burden and compromising outcomes.
Creative Coping
A minority developed innovative solutions, including self-devised non-pharmacological techniques, hobby-based distraction, and adaptive goal-setting within physical constraints.
Diverse Symptom Management Dilemmas
Patients faced multilevel barriers spanning personal, social, and healthcare systems.
Insufficient Disease Knowledge
Participants reported critical gaps in understanding treatment mechanisms, long-term risks, early warning signs, and evidence-based management, heightening anxiety and ineffective coping.
Limited Self-Advocacy
Many patients hesitated to voice concerns or negotiate care plans due to perceived clinician time constraints, self-doubt, and hierarchical barriers.
Inadequate Social Support
Participants experienced insufficient practical and emotional support from families, employers, and policies, including symptom invalidation, occupational marginalization, and financial strain from uncovered therapies.
Diminished Self-Management Motivation
Symptom persistence, negative affect, past failures, and uncertain outcomes created demotivating cycles that undermined health behaviors.
Personalized Symptom Management Needs
The burdens, predicaments, and individualized coping styles experienced by patients revealed their urgent needs for all-round and multi-level support.
Disease Information Needs
Participants sought credible, individualized information on drug mechanisms, long-term risk surveillance, symptom management, and reliable resources, delivered via multimodal formats.
Lifestyle Management Needs
Requests included science-based dietary plans, feasible exercise prescriptions, sleep optimization techniques, and ADL modifications.
Psychological Support Needs
Participants desired interventions addressing anxiety, body image distress, cancer-related fatigue, and resilience-building through counseling, peer groups, and digital mental health resources.
Digital Health Integration Needs
Strong expectations existed for technology-enabled support, including credible online communities, remote symptom tracking apps, streamlined e-consultations, curated educational content, and hybrid care models.
Discussion
This study, through in-depth interviews, reveals the complex symptom experiences and management needs of breast cancer patients undergoing endocrine therapy. The qualitative exploration focused on long-term treatment burdens, capturing subjective experiences, coping mechanisms, and multidimensional management dilemmas and needs that are difficult to access through quantitative research.
The identified multidimensional burdens and systemic challenges indicate that the current medication-centered service model inadequately addresses patients' intertwined physical, psychological, and social needs. This provides essential evidence for implementing precise symptom management strategies for these patients.
Conclusion
The study highlights the need for a personalized approach to medical services, addressing the unique symptom experiences and management needs of breast cancer patients during endocrine therapy. The findings emphasize the importance of knowledge transfer mechanisms, doctor-patient interaction models, and social support systems in improving patient outcomes.
